People of all ages and gender can be diagnosed with an eosinophilic disease, no two diagnosis stories are the same, nor is their journey.
We thank those who have shared their story here to help raise important awareness.
If you'd like to share your story, please contact us or email your story and photo directly to admin@ausee.org
Liana's Story
I am 36 years old and live in Darwin, Australia. I was diagnosed with Eosinophilic Oesophagitis (EoE) about 12 months ago after a long, frustrating journey trying to find out why I was so unwell. EoE is a chronic allergic/immune mediated inflammatory disorder of the oesophagus.
I attributed initial symptoms of chronic heart burn on pregnancy and coffee. More mild impactions I thought were caused from eating too fast. I experienced a whole range of symptoms, which in isolation, seemed minor. Ongoing exhaustion could almost be expected, given I was trying to balance work, university and life with young children. Daily diarrhoea was initially blamed on my stressful job. Ongoing anaemia (despite iron supplements and iron infusions) was blamed on my vegetarian diet. I repeatedly explained to doctors that I was following the plan set by a dietitian however felt that this was dismissed. The mouth sores I frequently developed were also blamed on my vegetarian diet.
I attributed initial symptoms of chronic heart burn on pregnancy and coffee. More mild impactions I thought were caused from eating too fast. I experienced a whole range of symptoms, which in isolation, seemed minor. Ongoing exhaustion could almost be expected, given I was trying to balance work, university and life with young children. Daily diarrhoea was initially blamed on my stressful job. Ongoing anaemia (despite iron supplements and iron infusions) was blamed on my vegetarian diet. I repeatedly explained to doctors that I was following the plan set by a dietitian however felt that this was dismissed. The mouth sores I frequently developed were also blamed on my vegetarian diet.
During the height of COVID (in the NT) I was prescribed a proton pump inhibitor and a steroid, which I took for a short time. This was due to the concern of needing to keep me out of hospital as much as could be prevented. However, it was always my preference to try to manage this disease without medication if possible. I did the 6-food elimination diet, ensuring that eggs, wheat, soy, cow’s milk, nuts and seafood was not consumed. I had another endoscopy but unfortunately still had active disease. Under the guidance of the gastroenterologist and the clinic's dietitian, I then started the RPAH elimination diet (in addition to avoiding the top 6 common allergens). It was only when consuming a low chemical diet that I finally felt well and symptoms resolved. The subsequent biopsy of my oesophagus was clear.
Managing the disorder at home is fine. I eat a limited amount of safe foods and make most things from scratch. Eating out and social events can be difficult. Initially I felt obligated to eat when family or friends would make me a meal that avoided one or two allergens but included another. I did not want to be rude and initially thought “just a little won't hurt!” I quickly realised that this is not worth being sick for days afterwards. I often feel bad when out with family and friends, as I cannot eat at most restaurants locally. I always read menus online beforehand. At Christmas I brought my own food to prevent cross contamination. It has been a long journey, but I am so grateful to feel well and to finally have answers.
Story shared by Liana; February 2021
Benji's Story
My son Benji is 10 years old and suffers with EoE and dysphagia. He had been poorly for a while and he was finally properly diagnosed in December 2018. The first two local GP's I was taking him to were telling us that it was all in his head! Benji had dropped 4kg's at this time and he was terribly unwell and unable to swallow properly. I refused to believe that it was all in his head, so I went to a different doctor's surgery and I got a third opinion. I even went as far as taking him to see a psychologist. The psychologist didn't believe that it was all in his head but by now, Benji was suffering with a certain amount of anxiety due to his experiences. The third GP took the necessary time and steps in getting Benji properly diagnosed. He had an endoscopy early December 2018 and the rest is history.
Over the last few years, Benji has missed out on a lot of school, particularly after his diagnosis. I have not been able to work for the past 2.5 years due to the constant care. I was really struggling with work life, struggling with Benji's condition, struggling with him being constantly unwell and I was struggling with a home life balance. The stresses and strains of the diagnosis of the disease and then having to cope with the stresses and strains of the disease, affected my marriage greatly. My last boss was struggling with me being off so much or taking off from work so much that I had no choice in the end but to quit my job so that I could look after my son. Due to Benji being constantly poorly and due to the many doctor/specialist/hospital appointments, some days are a battle for both of us. We both often feel isolated, deflated and disheartened. I often feel like a nurse and feel like I have been in home isolation for the past 2.5 years, way before the COVID hit! Benji feels like he is always sick and often cries over this.
When Benji was first diagnosed, he lived on a diet that consisted predominantly of liquids, 80% of his diet was liquid due to the severe dysphagia.
I was constantly in the kitchen preparing meals for him from scratch and I was constantly feeding him, sometimes up to 12 very small meals a day! I felt like I was having an affair with my Nutribullet, lol. I managed to help him put some weight back on, but he did not thrive for about 12 months after diagnosis. School lunches at this time was challenging and for Benji, school was challenging in general. He has had to endure so much for a 10-year-old boy, he absolutely amazes me to how resilient, thick skinned and tough he is! Kids at school have made fun of his condition, his food, his eating and drinking habits and there certainly is a lack of understanding on the teacher's part too. Vagueness and a lack of confidence at school is misconstrued as being naughty which simply is just not true, and it just adds to the stress of learning at school. There definitely needs to be more awareness made in the schools (the educational system) with this condition and there needs to be more compassion too. I feel like my son is slipping through the cracks of the education system because of his condition. The slightest sniffle from his allergies and he is sent home and not allowed to go back until it all clears up! Good luck with that! Benji is constantly being told to hurry up and eat his food from his peers and he really struggles at birthday parties and other gatherings as he is restricted by food, takes a long time to eat and has a challenging time getting food down his throat. It is very disheartening for him and he often feels embarrassed.
I have even been blamed for his condition by someone who refuses to acknowledge and believe that EoE exists, it is very upsetting. If I could take it all away for Benji, I would do it in a heartbeat! There needs to be more compassion towards others that are suffering with this debilitating disease and less judgement from others that don't even know or understand the disease. I am currently looking for work but will not be able to go back full time as I need to be there for my son, his health comes first. Benji manages well with his EoE and dysphagia, he has grown taller lately and has maintained his weight, even putting weight on. I am so proud of him each and every day and I love him so very much. Story shared by Emily (Benji's Mum); July 2020
I have even been blamed for his condition by someone who refuses to acknowledge and believe that EoE exists, it is very upsetting. If I could take it all away for Benji, I would do it in a heartbeat! There needs to be more compassion towards others that are suffering with this debilitating disease and less judgement from others that don't even know or understand the disease. I am currently looking for work but will not be able to go back full time as I need to be there for my son, his health comes first. Benji manages well with his EoE and dysphagia, he has grown taller lately and has maintained his weight, even putting weight on. I am so proud of him each and every day and I love him so very much. Story shared by Emily (Benji's Mum); July 2020
Stacey's Story
I have had unexplained symptoms for over 15 years of my life.Doctors had put it down to GERD.But I just knew in my gut that there was something else going on.I had impactions daily, I couldn’t swallow tablets. I put it down to anxiety because I had gotten so many stuck and I had become afraid to take pills.The years past and I got worse.I had multiple tests done with all normal results.Finally I got sent for an endoscopy, that was September 2018 and I was diagnosed with Eosinophilic Oesophagitis.
Now that’s not where the story ends...
Now that’s not where the story ends...
We are still both in the deep end of our EoE journey.We are both on the elimination diet.We are both still having a lot of problems.We are soon to head to another specialist with hope in my heart!
Stacey ; January 2020
Jboy's Story
When my son Jboy was young, failure to thrive, not sleeping and always crying, we had no idea what was wrong, I never thought life would get easier or better. I never really hoped that he would achieve dreams we just hoped he would live and grow well.
Now Jboy is 16 years old, is 5 foot 10 and weighs 64 kilos. Something we thought would never happen and it has been (and still is) a struggle getting enough calories into him as an athlete on almost no food. Jboy is a dedicated competitive swimmer, doing 2 gym sessions and 7 swim training sessions a week. My son does all this whilst drinking about 2 litres of elemental formula a day as he only has 16 safe foods in his diet. This is a photo of him 2 weeks ago after winning his age group in the 2.2km Byron Bay ocean swim! Ten years ago or even five years ago I would never have dreamt this would happen. We just wanted to help stop the pain he lived in every day.
Now Jboy is 16 years old, is 5 foot 10 and weighs 64 kilos. Something we thought would never happen and it has been (and still is) a struggle getting enough calories into him as an athlete on almost no food. Jboy is a dedicated competitive swimmer, doing 2 gym sessions and 7 swim training sessions a week. My son does all this whilst drinking about 2 litres of elemental formula a day as he only has 16 safe foods in his diet. This is a photo of him 2 weeks ago after winning his age group in the 2.2km Byron Bay ocean swim! Ten years ago or even five years ago I would never have dreamt this would happen. We just wanted to help stop the pain he lived in every day.
We are grateful that Jboy also has some amazing friends watching out for him and so thankful he gets to experience being a ‘regular’ teenager. Last weekend he went to a party with 30 kids sleeping over at a house about 10kms from our house in their tents and swags. The parents were so accommodating that they did not do breakfast until 9am so that Jboy could stay until 8.30am because the smell of eggs cooking could set off an anaphylactic reaction due to his severe egg allergy. The parents were really relaxed about him being there (he freaks most people out once they know how sensitive he is) and his friends are so aware of his medical issues that the girl having the party even went home during the week and told her dad that he couldn't mow before the party or Jboy won't be able to go and she wasn't even asked to do this for him. How great is that!
Yes Jboy still has days he is too sick to get up and yes, he has weeks he doesn't go to school but through encouragement and determination he always gets back up and goes again. So never stop dreaming for your child and always encourage them to go for it when they are passionate. Our kids are amazing resilient people who can go and achieve amazing feats!
Story shared by Rebecca (Jboy's Mum); May 2019
Henry's Story
My son Henry was diagnosed with EoE at 11 months old. He was taken off all foods and we struggled to find anything that he could have until he was 3 years old. He never slept. He was always in pain. He was only on elemental formula for years. I cried all the time.
We started with carrot, apple and pear and those where his safe foods for a year. It’s incredible this allergy journey. You find that you are surprised by a stranger’s kindness and stunned by some people's indifference or harshness. You worry all the time. Worry if they are safe, worry if they will be invited to that party, worry if they will eat something they should not. Worry if they are getting enough nutrients. Wondering if you are doing the right thing.
It does get easier as they get older as they understand what they can eat but then it gets harder as they realise what they can’t eat. The anger. The bitterness. ‘Why can everyone eat and I cannot?’ Slowly through the years we celebrated gigantic milestones. Adding wheat and dairy into his diet was gigantic. But being able to eat hot chips at McDonald’s may have been the greatest day on record for my family.
We started with carrot, apple and pear and those where his safe foods for a year. It’s incredible this allergy journey. You find that you are surprised by a stranger’s kindness and stunned by some people's indifference or harshness. You worry all the time. Worry if they are safe, worry if they will be invited to that party, worry if they will eat something they should not. Worry if they are getting enough nutrients. Wondering if you are doing the right thing.
It does get easier as they get older as they understand what they can eat but then it gets harder as they realise what they can’t eat. The anger. The bitterness. ‘Why can everyone eat and I cannot?’ Slowly through the years we celebrated gigantic milestones. Adding wheat and dairy into his diet was gigantic. But being able to eat hot chips at McDonald’s may have been the greatest day on record for my family.
I share this because I understand your pain and I understand your joy. And I hope I bring hope. x
Story shared by ausEE President, Mercedez (Henry's Mum); April 2019
Andy's Story
Andy started throwing up, between 2-4 times a day, most days from 8 months old, and by the time he was 1 year old he was categorised as ‘failure to thrive’. Even though I had taken him to many doctor visits, I was told that’s just what some kids do. As his weight now wasn’t registering in the growth charts he was referred to a paediatrician. This is when the tests began. He had ultrasounds, blood tests, x-rays, a barium swallow and we had eliminated a lot but still had no answers. Finally the decision was made to put him under General Anaesthetic at 15 months old for an endoscopy to see what was happening inside. The diagnosis of EoE was handed down and we began trying to understand this rare disease.
Eosinophilic Oesophagitis (EoE) is an inflammatory disease that is characterised by eosinophils (allergy cells) building up in the lining of the oesophagus. The eosinophils cause inflammation in the oesophagus which causes symptoms of feeding intolerance, poor weight gain, vomiting and reflux like symptoms. After his diagnosis, Andy was put on the top 8 elimination diet and on Neocate formula to bump up his calorie intake.
Eosinophilic Oesophagitis (EoE) is an inflammatory disease that is characterised by eosinophils (allergy cells) building up in the lining of the oesophagus. The eosinophils cause inflammation in the oesophagus which causes symptoms of feeding intolerance, poor weight gain, vomiting and reflux like symptoms. After his diagnosis, Andy was put on the top 8 elimination diet and on Neocate formula to bump up his calorie intake.
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You can follow Team Andy on Facebook here.
Story shared by Kristin (Andy's Mum); February 2019
Henry's Story
Meet Henry!Henry is a super kid!A cheeky 7-year-old and a barrel of laughs.He has a real kind soul, with a smile to match.He loves aeroplanes, and when he grows up he wants to be a policeman.He knows 3 jokes (all about poo), and his favourite song is ‘all about that bass’.
Henry’s favourite things about living on the road are;
- You get to have new experiences and see Australia- You get to go to bed in a caravan- You see lots of cows on the road- You get to go on tours and do all sorts of cool things- You get to swim in different pools and beaches...and he’s now part of a growing community that gets to call Australia his school yard!...
Henry ; Lauren Murphy Photography
Henry was one of the biggest motivators for us to sell up, and take off around Oz. Since he was born he’s been a clinger. He lived the first year huddled mostly in a sling with me and was always an ‘unsettled’ baby. When he hit day care and school he was the child who clung to your legs screaming at drop off and had to be pried away. I’m sure a lot of you can relate.
Henry also wasn’t well. Since near birth he’s had reflux symptoms. The projectile kind. He also has eczema, asthma and allergic rhinitis. We bounced from a paediatrician to allergists to a paediatric gastroenterologist, and around again over the course of 5 years. We met with dieticians, nutritionists and tried most alternative and complimentary therapies. With no real answers, we couldn’t seem to find the cause of why he was so unwell, let alone a suitable treatment. Henry’s symptoms persisted through early childhood, and as he grew older and he begun to talk, we listened.
Henry told us he had pain every day.He told us he feels sick in the tummy and wants to throw up all the time.He told us his throat feels sore and food gets stuck.He told us he has bad headaches.We saw he was tired all the time, and had difficulty sleeping.We saw his lunchbox come home still full of food.We saw him experiencing pain.We saw him every year blow his birthday candles out, then push the cake away.We saw him not gain weight.We saw him fail to thrive. As parents, it was hard to find the energy, the determination, and the money to keep knocking on medical doors advocating for our child, especially when all the health professionals just kept scratching their heads. At times, it felt like those closest to us also doubted us too. Then last year, we yet again went to a specialist for a ‘second opinion’. We met with another paediatric gastroenterologist, who not just heard Henry, but listened to him. Who listened to us as parents. Who didn’t dismiss us. He became part of Henry’s team. He wanted to find out why Henry was feeling the way he did, and try to alleviate it, and he still hasn’t given up.
Henry also wasn’t well. Since near birth he’s had reflux symptoms. The projectile kind. He also has eczema, asthma and allergic rhinitis. We bounced from a paediatrician to allergists to a paediatric gastroenterologist, and around again over the course of 5 years. We met with dieticians, nutritionists and tried most alternative and complimentary therapies. With no real answers, we couldn’t seem to find the cause of why he was so unwell, let alone a suitable treatment. Henry’s symptoms persisted through early childhood, and as he grew older and he begun to talk, we listened.
Henry told us he had pain every day.He told us he feels sick in the tummy and wants to throw up all the time.He told us his throat feels sore and food gets stuck.He told us he has bad headaches.We saw he was tired all the time, and had difficulty sleeping.We saw his lunchbox come home still full of food.We saw him experiencing pain.We saw him every year blow his birthday candles out, then push the cake away.We saw him not gain weight.We saw him fail to thrive. As parents, it was hard to find the energy, the determination, and the money to keep knocking on medical doors advocating for our child, especially when all the health professionals just kept scratching their heads. At times, it felt like those closest to us also doubted us too. Then last year, we yet again went to a specialist for a ‘second opinion’. We met with another paediatric gastroenterologist, who not just heard Henry, but listened to him. Who listened to us as parents. Who didn’t dismiss us. He became part of Henry’s team. He wanted to find out why Henry was feeling the way he did, and try to alleviate it, and he still hasn’t given up.
Story shared by Henry's Mum ; November 2018
Emily's Story
It's almost been a year since I was diagnosed with EoE, but this diagnosis wasn't the start of my journey. My name's Emily and I'm 23 years old. My whole life I've had to live with the struggles that come with being a child/person who has serious allergies and constant ill health. When I was a baby my Mum found out that I had anaphylaxis to peanuts when she gave me peanut butter for the first time. These days’ nut allergies, especially peanut allergies are a lot more common than they were when I was a baby.
Luckily, I had a Mother who had previously worked in the Dietetics department at Prince Alfred Hospital with Anne Swain in Sydney and she knew how to go about dealing with allergies. As a child, I saw some amazing doctors who taught Mum and I how to deal with my allergy. Along with peanuts, I'm also allergic to almonds, dust mites, dog dander, cat fur and soy. I am also seafood and gluten intolerant. I also have severe asthma and as a child I used to get sick quite often.
